Understanding Endometriosis with Amy Corfeli

It's estimated that 180 million people worldwide are affected by Endometriosis, yet on average, there is an 8 year gap between people presenting with symptoms and being diagnosed.

Join the girl and her gyno-mom, and their special guest, endometriosis advocate, Amy Corfeli, as they discuss:

What is endometriosis?
Common symptoms and co-conditions
The diagnosis process
The impact on being dismissed by the medical community
Self-management options
Medical management options
& more!

Amy Corfeli, cohost of her own women's health podcast, "In Sixteen Years", shares her personal experience regarding Endometriosis, as well as a wealth of knowledge gathered from years of doctors' visits, research and interviews with endometriosis patients, experts, surgeons and more.


More Links:

Instagram:

https://www.instagram.com/notsoprivatepartspod/


Learn more about our Community Shout out:

Kimether from "Endo Thick Of It" and "The Rebellious Uterus"

Endo Thick Of It with Brandon and Kimether Podcast Series - Apple Podcasts

The Rebellious Uterus (@therebelliousuterus) • Instagram photos and videos


Learn more about our special guest:

Amy Corfeli & her podcast and website "In Sixteen Years"

In Sixteen Years – Endometriosis Support

Resources:

https://www.notsoprivateparts.net/show-notes

Transcript

Not So Private Parts Theme Song:

When you know your body, you feel empowered. Open conversation, safe space, sharing stories, knowledge.  Learning together,  growing and knowing not so private parts.

Just a girl and her gyno mom, let's get into it.

Intro:

Endometriosis is a systemic inflammatory full body disease.  It is when tissue similar to that, of the endometrium, which is the uterine lining grows outside of the uterus. Whilst there's hypotheses about what causes it. No one quite knows the reason.  Like many stereotypically women's conditions, it has received lesser attention and funding in the medical community for years. 

It is a disease that doesn't just affect one age group. It's been found in fetuses as well as people in their eighties.  And get this it's estimated that endometriosis affects 180 million people worldwide.  Listen to this fact from our guests today, Amy.

It is this prevalent as Alzheimer's, lupus, multiple sclerosis, inflammatory bowel disease, rheumatoid arthritis and Parkinson's disease combined. More people have endometriosis than all of those diseases combined.

If you're like me, I knew very little information about endometriosis. Up until college. I had really never even heard the term.

Even then I thought it was a very rare condition based on the notion that not many women I knew had endometriosis or talked about it.  I have heard of Parkinson's and Alzheimer's and some of the other conditions that Amy mentioned. And I'm sure many of you have too.  Thankfully today, we're taking a look at a clearly taboo topic. Endometriosis.

Acknowledgement of Country:

  We would like to begin today's episode by acknowledging the traditional owners of the land in which we dreamed about, created, and recorded this podcast.  The Gadigal people, the Bedigal people, the Potawatomi people, and Peoria people. We pay our respect to elders past and present and acknowledge First Nations peoples continual culture and contributions they make to the life of these regions.

Indigenous women, as well as women from every culture across the world, have played an integral part in women's reproductive health for millennia.  It is impossible to separate the achievements in modern women's health from the knowledge passed between women since the dawning of time.  From the Greek women meeting for Thesmophoria in autumn to exchange contraceptive practices and celebrate the world's fertility,  To indigenous Mexican women utilizing the Barbasco root as a form of contraception, a plant that was integral in the creation of the modern birth control pill.

To early First Nations women in the Americas understanding their cervical mucus to better work in harmony with their menstrual cycle.  To women in tropical Sri Lanka and India eating a papaya a day to keep pregnancy away.  Women acting as midwives, as mothers, as healers, as supporters.  A sincere thank you from a modern girl like me to the women throughout time who have shared knowledge and stories to support one another to live healthy, fulfilled lives.    

  Medical Disclaimer:

Whilst in this this episode, we will be hearing from medical experts. Please consider this to be personal medical advice. If you have a condition that needs treatment. Please see your own physician to be properly evaluated, counseled and treated

 
Our Endometriosis Conversation:

Today we are very lucky to be joined by Amy Corfeli. Amy is an endometriosis advocate. She has her own podcast centered around endometriosis in which she and her best friend, Brittany, share personal stories about living with endometriosis, as well as sharing tons of useful, impactful information on endometriosis in a fun and digestible way.

Amy also leads a host of interviews with experts, advocates, and surgeons.  I knew very little about endometriosis before I started researching for this episode. I have only met, I think, one person who has been open with me about having endometriosis.  I feel like I had a lot of learning to do.

 Being able to use all the information on Amy's podcast, which is called In 16 Years and also her website, which goes by the same name has been such a crucial resource for me as someone who's coming into this, not knowing a lot. There is just a lot of helpful information.  I feel like it was such a good starting point for me.

As well as, as I'm sure we're going to get into in this chat, there's so much information out there on endometriosis and not all of it is true.  I feel like having a podcast and a website that is so well researched and clearly made by someone who is very passionate about this topic on a personal level, is just even more important.

 It has been such a great resource for me and I'm sure for other people.  We are absolutely thrilled to have her on the podcast and to be talking with her.  Thank you so much for joining us today, Amy. We're so glad to have you here. 

First of all, thank you so much, Valerie, and thank you Dr. Poulos for having me here today to talk about endometriosis, such a important topic   I was hoping to start, maybe you could just introduce yourself and tell us a bit about you as a person.

Amy Introduces herself:

Yeah, sure.  My name is Amy Corfeli and my pronouns are she, her.  I have endometriosis. I got diagnosed, well, I got diagnosed when I was 33.

I began having symptoms when I was 17. So there was a 33 year, uh, 33, there was a 16 year gap,  to get diagnosed with endometriosis. I, like you said, I have a podcast,  that is about endometriosis.  It's full of  expert interviews with,  different doctors, surgeons, patients across the world,  basically just, learning and educating about endometriosis, because unfortunately, I think we've seen that,  you know, the medical community at large just is not very knowledgeable in endometriosis.

Hence, one of the reasons why  there's such a long diagnostic delay and unfortunately it's really,  it's a heavy burden on the patient's shoulders to have to learn about endometriosis so that we can make informed decisions about our care.  I think unfortunately the majority of us, when we are with our doctor, we're discussing options, we're not being told all of the options or we're not being told,  crucial information about the options.

Important potential side effects about the options.  It's really fallen on this patient community. I am one of many endometriosis advocates out there, but trying to educate,  at large through different, mediums. And in my case, I have the podcast and I have  my website and I also have a book.

The book is more about like the emotional side of having endometriosis. It's called Finding Peace with a Devastating Disease. It's more about   how to live, you know, how do we live with this chronic and incurable disease that is impacting every single aspect of our life.   I'm so just blown away by all you've been able to create.

And I'm wondering  what made you decide after going through this experience that you wanted to be putting information out there or be taking matters into your own hands to be putting stuff out like your website and the podcast and your book, what  inspired you to be creating in 16 years?   I think at the beginning, you know, I started it right after I had had my excision surgery and I saw a big,  improvement in my symptoms.

I could not believe that I had, you know, a serious incurable illness after 16 years of being told there was nothing wrong that's on your head, you know, just  do yoga and meditate and  eat more turmeric and celery juice and, and like all these things that, may or may not

in some cases be good habits  for a person. But I was just, I was so floored and the validation that I, and I think many people receive when we actually get diagnosed with this illness after a decade, two decades of diagnostic delay and just basically being told we're hysterical.  I just felt like, I finally had found my voice.

For so many years, I had lost my voice because I'd been,  gaslit not only by the medical community, but, by the people around me, whether that was coworkers, friends, parents who didn't believe me because I was like, I'm sick, I'm sick. And they're like, no, you're not. No, the doctors say you're fine.

When I was diagnosed, I was like, Oh my God, like I have to talk. Talk about this. And that's when I learned there was this like huge endometriosis community that my story was not in any way singular, that it was actually a very, very common story.  As we began to do the podcast with my best friend, Brittany and I, mostly at the beginning, we talked about like mental health and, I should clarify, we talk about like our mental and emotional health and  tools and resources that we found for ourselves to  live.

Cause she also has chronic illness,  but not endometriosis. And as I was doing the podcast, I realized,  we started getting a lot of listeners, like, you know, hundreds and then thousands. And I was like, Oh my gosh,  this is a responsibility. Yeah. As a gynecologist and a gynecologic surgeon who's known about endometriosis since  the early days of my residency, it's heartbreaking to me that women find it so hard to get diagnosed.

I read on your website, Amy, that the World Health Organization estimated that there's around 190 million people worldwide that have endometriosis, but it takes around eight years on average to be diagnosed.  I'm wondering for either of you, why do you think this is the case? Or why is it something that's so hard to diagnose?

Well, sometimes I think that women that come in with pelvic pain, first of all, patients that have chronic pain can be difficult to deal with. By the time they see any doctor, they've usually seen several with this complaint.  When we see women who come in, let's say it's cyclic menstrual cramps, and we want to treat them with birth control pills to help monitor their hormones and regulate it.

And they don't respond to those pills. When the usual tools for a physician don't work,  I think they want to blame the patient then, you know, not like, well, listen, I know what to do. I gave you the hormones that should make every woman's cramps go away, and you're still complaining. What's wrong with you?

And maybe this is your,  psychiatric, and maybe it's a relationship with your boyfriend, and that's why you say you have pain with sex, or you're having more menstrual cramps.  I think there's some patient blaming because doctors don't want to fail. And I don't want to blame every doctor for that.

Certainly if you have endometriosis for some women. Regulating hormones, we'll get into the treatment a little bit later, will be helpful and birth control pills can help mild cases. But the learning more and more about deeply infiltrating endometriosis, which ultrasound is getting better and MRIs now here becoming more common,  have really made a difference.

I've been practicing for decades and decades. When I was first in my residency. Thank you.  an ultrasound couldn't even tell if a woman was 12 weeks along. I'm not kidding. They couldn't see a six week pregnancy and now we can see it like the day you missed your period.  Technology has changed a lot and that can help validate what patients are feeling.

  Yeah, I think what you said is really spot on Dr. Poulos. And, you know, to add to that, I would say that, From the patient perspective, I see like various reasons why we're, the diagnostic delay is so long.

For many people who begin  with endometriosis symptoms, they may begin with problems with their period. Not every person with endometriosis has problems with their period or painful periods. But for the ones of us that do, oftentimes we go to the doctor, we're told,  period pain is normal or we may not even make it to the doctor if  in our family history,  our,  mother or sister or, someone else in our family also had painful periods.

They might say something like, Oh, that's just normal. Like, you know, your mom had the same thing.  That's just pain, pain runs in the family or,  pain is just part of  having a period.  I think that's one hurdle, but another,  huge, huge glaring obstacles. What Dr.

Poulos said about when we finally do go to the doctor,  oftentimes we're not believed, or where the pain is normalized or they run some tests.  They don't find anything because we'll talk about diagnostics in a bit.  In my own case, I began having painful periods and I had  a lot of diarrhea and a lot of fatigue and all those problems seemed like they were different problems. They didn't seem like they were connected.  You go to the GI doctor and the GI is like, let me do a colonoscopy and endoscopy allergy test. There's nothing wrong with you.

Okay. You go to a doctor for  your fatigue. They're like, Oh, you just must be stressed, honey. Okay.  You go to the gynecologist, like period pain is normal. And so then you're just like, At square one, where you're like, okay, no one is addressing my symptoms. No one is putting  two and two together.

Then years and years are going on where,  you're going to the doctor and that it's this, the normalization, the running tests that don't actually detect endo.  It's never, being diagnosed and, and on and on and on.  I think many patients end up self diagnosing at the beginning and being like, I think this is what I have.

Then going after trying to find a doctor who can confirm that, which is very unfortunate.   I found it really interesting. What I saw happen as I've been practicing for more years is,  I've been saying for decades, if you've got pelvic pain and it's not responding to the usual things I do that make it better, then think endometriosis.

How do we diagnose it? Right. So convincing a young woman,  to have surgery, to make a diagnosis, maybe even some of the gals I see are teens. So parents have to sign off on it and they may be like, no, we don't want surgery for that.  To make that diagnosis, to see the endometriosis, to biopsy and make sure that's what we're treating instead of just putting on really strong hormones to treat it.

If we don't really know what that you have it to me, that was never palatable.  I want to know what I'm treating before I give you systemic drugs or drugs that get into every cell of your body.   Just to take a step back in case people don't know,  can endometriosis be diagnosed and what would be the route to diagnose it?

  Laparoscopy is a diagnostic surgery. It's done with a woman most commonly under general anesthesia, although there are some places that will do it under a local anesthetic, so it's a little incision typically in the belly button or on the umbilicous and we can insert a camera, which is the laparoscope.

and it lets us see inside the abdomen and look for areas of endometriosis. if there's not a big collection of endometriosis, it will show up on imaging, right?  To see it with my own eyes, to see the changes that are typical on the peritoneum or the covering of all our organs in our belly, to look for implants on the ovary or look for scarring that occurs.

that may pull organs out of place or stick them together unnaturally, is the way I like to diagnose this. But if someone has a lot of pain and has deep infiltrating endometriosis, it may show up on an ultrasound where there's an endometrioma or a large cyst of endometriosis on an ovary. it may show up as, a nodule, a cystic nodule over the rectum.

It may show up on ultrasound, but MRI is more.  It's more commonly used.   How could it be diagnosed with MRI?  Well, first, I think maybe we'll, it will have Amy chime in on this,  how hard it can be to get an MRI, right? So if I say, Hey,  my, my patient, Amy has pelvic pain. I'd like to get an MRI.

Do you know how easy that is? Not so I mean, even though I'm the doctor and I really think she needs it, she's had ultrasounds and she's tried medications and she's failed physical therapy. I'm getting a little bit ahead of some of the treatments you might've done and she's failed birth control pills or they failed her.

I'll say I want an MRI to look for, I think she has deep infiltrating endometriosis.  Right off the bat it's going to get denied by insurance. They're going to ask for a review and I'm going to have to  Take either my nursing staff or me, beg for the insurance company to meet with us and give us a peer to peer review.

So peer to peer, you would think means that I'm getting a peer physician to speak with me about why I want this test and why are they blocking it? Because MRIs are pretty expensive. a peer may be.  someone who has some type of medical background, but not a doctor. It could be ear, nose and throat specialist that happens to work for an insurance company.

They're going to talk to me and say, Nope, we denied your request.  If we say, well, no, that's not a good enough answer. Let me talk to a gynecologist so I can explain why I need this.  They're going to answer maybe no.   It's frustrating for the patient as well as for the physician.

Cause then there's only so many hours. We can spend trying to fight for an individual patient to get the insurance company to go along with the test that we think we need. MRI is not going to show superficial endometriosis because it's not big enough to show up, but when they're the large implants under the layers that we might not see in surgery, there are deeper layers that you would really need the MRI to show for us.

MRI is going to highlight those areas.   Amy, I want to hear what you have to say about this, and I'm hoping you can also talk a bit about, I was learning through your website about, People trying to diagnose endometriosis with medication as in, try this. And if your symptoms go away, then, okay, that means you must have endometriosis and  why that's wrong.

Unfortunately,  as Dr. Poulos was saying, Imaging can be helpful, with endometriosis, but it can be really hard to get the insurance to improve it.

Another thing is it can be really hard.  If your doctor doesn't actually know how to, they're not actually an expert in imaging. they can easily just do  a quick ultrasound and be like, Oh, there's nothing there  shrug.  Maybe then you go get advanced endometriosis imaging, whether it's ultrasound or MRI.

And they're like, Oh yeah. Like we see this and this and this and this. because there's  added maneuvers .  I'm not super familiar in MRI, but they cut the images differently. Unfortunately because  It's hard to  see the doctors who, have the expertise, who have the knowledge, and so,  there are some doctors who are under the impression that, if you give a patient hormonal medication and the hormonal medication,  helps with their pelvic pain, if that's, the symptom that they're looking at, then they have endometriosis.

And that actually happened to me. When I was 30, so this was about nine years ago, I was really happy because finally a gynecologist said to me, you know what? Your symptoms sound like endometriosis. No one had, you know, ever said that. I was like, Oh my God,  someone's listening. Someone isn't just like, Oh, you have pain.

Go on birth control. So, So I was super happy.  Then she said  Oh, you know, you can go on, this GNRH agonist, really popular one right now, uh, is called there's Lupron and then there's GNRH antagonist, which is called Orlissa. So these are two medications that basically what they do is  they lower your estrogen levels,  to either menopausal or near menopausal levels.

With the hopes that it's going to help with your endometriosis symptoms. But unfortunately, there are some doctors who. are under the incorrect impression that if that helps with your pain, then that confirms that you have endometriosis. But in reality, there, there could be, you know, many other reasons why you could go on a medication that lowers your estrogen and you could see a improvement in your symptoms.

I was in that very frustrating. Even before these newer drugs came out and when Lupron was the big medication,  and the only one we had were for this latest generation, there was a big group of physicians that were fighting against doing surgery on women to diagnose endometriosis and to give a child a medication instead.

I never really bought into that, but surgery to diagnose endometriosis did go away for a while.  Yeah. And, you know, even that doctor, she told me, cause she was like, Oh, you know, they're trying to change the guidelines. So if you just take this medication, it'll diagnose you. And I'm like, what? What?  You know, so that, that is absolutely not true.

And if someone is working with a doctor, who's like, Oh, this medication will diagnose you. That is like a very clear red flag. Okay. This doctor is not an expert in endometriosis. And we, you know, we do want to, if possible, see an expert in endometriosis because of all this misinformation out there. I will say that, you know, so if we inform a patient, if a patient has the options, look, you can,  take the medication and see if you feel better and stay on it.

You know, for however long we think it's going to take, or we can do surgery to look for an endometriosis, do a biopsy, et cetera.  That may be a patient's choice. That's okay. But,  I think it's, there may be a lot of reasons why someone can't or doesn't want surgery and that's all right too. Then to talk about the different types of surgery, whether it's going to be a diagnostic.

It may need to be a two step surgery.  In general, if I need to do surgery on a patient, I take that very seriously. I don't usually like to do two step surgery, but this is one case where I will.  I want to know what we're up against. I want to do a surgery to diagnose you, kind of do staging, see where we're at, see how bad it is.

Then talk about what does that mean in terms of medication versus a bigger surgery to remove all the endometriosis.  Like I said, one point where it makes sense to me, or I may say, you know what, we've got to do plan to have two surgeries. One's going to be smaller, but I can't give you full counseling until I know what's there.

 ​I feel in hearing you two talk about this,  this sense of frustration. I'm thinking how frustrating it'd be to be continually not feeling well and being dismissed or even having people who may be well intentioned.  Not know what's going on. I feel like that could be extremely disheartening.

I know you're talking about how a lot of the early days of your podcast dealt with talking about the impact on mental health.  I was hoping you could share a bit about what was that journey like of taking 16 years to be finally diagnosed or have this taken seriously?  How did that impact your mental health?

Yeah, you know, um,  I put out an episode. I can't remember the name right now, but it was I think it was called like the psychological impact of medical gaslighting.  It is,  I think the most popular episode and so much feedback and comments and emails received.  Because this is really common, what we're talking about,  receiving so much dismissal and invalidation.

and misinformation from the doctors.  In my own case, and I think in the case, as I could see from the response of that episode where I talked about this,  the psychological impact that that has on a person,  I just became a shell of myself of you say that you're, you're say that you're having this experience, which is In my own case, it was like pain, diarrhea, fatigue, incontinence, urinary issues.

Every time I ate, menstruated, had sex, pooped, peed, or slept, I was in pain, right? So it's  24 seven, you're in pain. A lot of that pain is, spikes up to like, unbearable amounts.  You're going through these horrible things. Maybe you have to leave your job,  maybe your relationship falls apart, your hopes and dreams disappear, right?

Maybe you're bedridden or maybe you only have three or four. days a month where you can actually  do something that you want at half energy, but at least you can  leave your house and the other days you're, you can't. And then this entire time, imagine that there's so many people telling you what you're experiencing isn't real.

You're making it up. You have a low pain threshold. You just can't handle your pain. You just want to be sick. You're just looking for attention or even like really harmful, like hurtful things.  It's your karma in the past catching up to you. It's a punishment from God for being a bad person.

You're not, yeah,  you're not having the right like lifestyle habits or the right dietary habits. You don't eat well enough. That's why you're sick. And so not only is it, The invalidation, but I think that creeps in the blame and the shame.  I know in my own case, I totally internalized all the comments that people gave to me and combine all those very harmful, ignorant,  ableist comments with, you know, I had, I think I had like 11 different doctors tell me that there was nothing wrong with me.

And. Actually, when I was 19,  a doctor did a diagnostic laparoscopy for endometriosis. Unfortunately, she, you know, she mustn't have known how to recognize all the presentations of endometriosis because a lot of doctors just think it's like black powder burn.  When they look inside, they think they're just going to find like black spots.

But,  So there's so many presentations of endometriosis, so many colors,  red, there's even clear. Sometimes it just looks like palpables, almost like pimples on your skin. So they don't know how to recognize all of that.  She looked inside, she was like, you look great clean as a whistle.

And then she was like, you don't have endometriosis. So of course that went out of my mind for years and years because someone, she told me I didn't have it. Yeah. So combine, there's nothing wrong with you from doctors, the authority, the medical authority with  all the people telling you why it's your fault, that you're so sick.

I think that for me, that's just, I just, I, I got to a point before I was diagnosed where I barely talked and when I talked, I talked in a, in a tiny little whisper, I felt like I couldn't talk louder, not because I was physically incapable  but because it was  emotionally, like, why should I talk?

I'm not, I have no value.  I'm not important. I don't deserve to be on this earth.  Imagine decades Decades of that. So not only you're not getting the treatment you need, you're not, you're living in the pain every day. Yeah, it's, it's very, very damaging. And that's why it's so important to, to talk about endometriosis  and get the word out there because,  like we said, 190  million people are living with this across the world is the estimate.

That's a lot, like that is a lot of people, you know, it is a small number.  It is this prevalent as Alzheimer's, lupus, multiple sclerosis, inflammatory bowel disease, rheumatoid arthritis and Parkinson's disease combined. More people have endometriosis than all of those diseases combined.

And I bet you that if you went and read that list, I just read, most people would recognize most of the diseases I said. But unfortunately when you say endometriosis to a lot of people, they either go, what's that? Or they go something like, Ooh, I don't want to hear about that. Isn't that like with your period, which it's, not, it's yes, it can evolve your period, but it's not a period disease in itself.

One thing I will say is that I don't want to bash all my colleagues, doctors.  There's a lot of really good doctors who, we're so siloed so that, there's not often a good way to communicate with other physicians. So like, you may come to see me and you've had an ultrasound or MRI or biopsy somewhere else, and it may be close to impossible for me to get those results.

One thing about the ACA, when our healthcare changed in the USA, all electronic medical records. First of all, all physicians had to go to electronic records and they were all supposed to talk to each other and communicate so that we could know, your care would  be transferable from whether it's a doctor in a small town over here or a big medical center over there.

But truth is they don't talk to each other. Some counter talks, some don't, then you have to know where to look.  It may be that I can't find out your results from somewhere else unless you physically bring copies of the papers with you. And that may not be good pictures from surgery or good copies from ultrasounds or MRIs.

It may be a report that may or may not be helpful.  It can be really frustrating for us as well.  And then knowing how to look for endometriosis. So I may look and see, like you said, like a little blister area.  inside the pelvis and say, wow, that looks to me like endometriosis.

And if it fits your symptoms, yeah, I'm gonna make that diagnosis,  but I may go above and beyond and say, well, let's get a biopsy and send it to pathology so that this lady has more data to show her insurance or whatever, whoever else she needs to get better help. The pathologist may not see endometriosis  under the microscope, but that's really frustrating.

So I'm still going to say, no, you have endometriosis.  It's helpful if I can take pictures during surgery  the picture should go in your hospital chart.  I find that because the hospital's electronic records are not tied into the camera and the OR, they're not, a physical picture may go with your chart and may never get put into your, your electronic track at the hospital.

I always print a couple copies, one for my office and one I give to the patient and say. Do not lose that, like, keep this picture with you forever, but this is a picture showing you had it, and the hospital may not be able to find that picture later.  Oh, it's so frustrating.  Amy, thanks so much for sharing about the start of your journey and going to the doctor's office and how you felt like it diminished your voice.

It makes me so sad to hear, especially because speaking to you now and Listening to your podcast, you have such an incredible voice and you are such a beautiful advocate for other people dealing with endometriosis. I appreciate you for opening up. It just makes me sad that you had to go through something like this.

But I also can see how you would go down that path. If tons of people are telling me I'm wrong, I'm wrong, I'm wrong. Of course, you have the impulse to think I'm wrong, or I am making this up. I can tell that you're extremely. Strong, confident person.  I think it wouldn't matter how strong and confident you are as a person.

I think that's just human nature. If people were continually telling me  you're being overly sensitive. I was thinking about this list you shared of all these different diseases or things we will have like Alzheimer's, dah, dah, dah, I knew every single one of those,  I couldn't help but think, I know that endometriosis affects more than just  people who are born as women. I can't help but think, Oh, but endometriosis is something that primarily affects women and no wonder that's got to be a reason why it is so under talked about it is probably so under researched. That just frustrates me so much and doing this podcast and learning about all these different issues and how so many things it's just because women are put at the background of medical research and medical care.

I'm so proud for you to come through this and to now be such an advocate saying that you couldn't have a voice and now you have such a big beautiful voice that you're sharing with others. I'm I'm floored by you. 

Now, I know one other thing on Val's list, I may be jumping out of order, but was to talk about, co conditions or comorbidities.

There are a lot of other diagnoses that go along with endometriosis. you talked a little bit about saying that you were told you have a low pain threshold.  We do know that people develop hypersensitivity to pain. Now, whether that is  You are just naturally more sensitive, your, your nerves feel pain easier than other people, or is it that there's some reaction in a chronic illness that gets your nerves all ramped up?

One way  I explain it to patients not using medical terms at all, is that we have some pain nerves that are really specialized or just meant to sense pain. Let's keep you out of danger, right? That's fire. That's really bad for you. Pull away quickly.  But a lot of our nerves are what I call general practitioners.

They should just be able to say it's hot, it's cold, that feels good, that's soft, that tickles, that feels bad, that feels really bad, that feels really dangerous.  So when nerves are chronically inflamed or irritated by a stimulus that's telling them this hurts, this hurts, this hurts, they pretty soon can't tell the difference between touch and cold and hot and pain and tickle.

Now everything they feel is pain. It's pain. It's pain. It's pain. Now you do feel pain very easily and other parts of your body as well. One of the comorbidities we see commonly is fibromyalgia. Or a condition where the nerves are really tight, maybe all over the body, maybe at certain types of the body.

And they just hurt all the time. That's associated with chronic fatigue.  I know that none of this is news to you. Amy, I see you're shaking your head because they go hand in hand. Again, during my training, so doctors, my age, nobody believed that chronic fatigue was a thing or that fibromyalgia was a thing.

They were not considered real diseases. And now they are, now they're taken seriously. But one of the other things that I sometimes worry about is that I may say to a patient, like, look, you've got chronic illness and chronic pain. It's affecting your work. It's affecting your intimate life with your partner.

I know it's affecting your relationship with your partner, maybe with other family members, and I want you to see a psychologist to deal with the pain. I know that some of them go away thinking she just said, I'm crazy. I need a psychologist.  That's not at all the message that we're trying to say.

Trying to get patients psychologists is not so easy, especially in this country. I may say, I want you to see the psychologist. Here's a really good one. And guess what? They don't take insurance or they don't take your insurance or there's a wait list. There's a 12 month waiting list.   I think just to break it down a little, what is a co condition and what are some common co conditions of endometriosis.

Co conditioned is just another medical problem. You have a diagnosis that is going to be, you know, it's going to be a diagnosis for a patient, but some ones that are commonly found with endometriosis, I think the two I mentioned are really common, but also some other, Hypersensitivity issues like irritable bowel syndrome, especially chronic diarrhea,  dyspepsia, or,  belching, feeling sick to your stomach all the time, maybe having, you know, inability to tolerate foods, maybe even being diagnosed with food allergies because of this kind of chronic hypersensitivity.

Do you have anything to add, Amy?  Yeah, everything that you said was great. Spot on.  I would say adenomyosis. That is basically where,  it's a disease of the uterus. Basically it's where there's  endometrium like tissue grows into the myometrium.

That's  the muscular wall of the uterus. Those are often found together in patients.  pelvic floor dysfunction. So this is where you have  your pelvic floor is like all the muscles and the ligaments and the fascia that we have, like in the bottom of our abdomen that's surrounding, our bladder and our, vagina and our bowels.

All of that can begin to have dysfunction and be causes of  pain, and symptoms, constipation, diarrhea, things like that.  Other ones are interstitial cystitis.  Also known as painful bladder syndrome and Dr. Poulos, like you were saying about the IBS,  I see the organs,  it's so inflamed down there and then the organs can have crosstalk.

If  the bowel is having pain and  the uterus or the bladder, like actually all of those nerves, eventually they feed into the same like dorsal root in the stomach. spine.  They can have this crosstalk where it's one area has like a lot of pain, inflammation.  Then  after, sometime the other, organs are like, Oh, you know, we feel pain too.

It's like this hypersensitivity that you're talking about.  Other probably right when I see patients for a painful bladder syndrome and they don't get better with my typical treatments,  and they're in the reproductive. age range, meaning they're still having menses. They'll say, well, I, now I suspect endometriosis,  but I'm not having menstrual cramps.

Yeah, but  something set you off and we're not finding a bladder cause. So it very likely could be the endometriosis that's inflaming the whole pelvis.  I love that you're, one of your go to's is endometriosis because I truly think that, so many patients with endometriosis have,  either bowel problems like IBS like problems or, bladder problems.

Like interstitial cystitis like problems,  which many times the, the cause of that is from endometriosis.  I firmly believe that if we had, you know, urologists and urogynecologists and then gastrointestinal doctors who could recognize this. the signs of endometriosis and recognize that the person presenting before you and put endometriosis on a differential diagnosis, that would  really, really cut down the delay in diagnosis.

I'll add like just a couple more. I think SIBO is really common in a lot of patients. small intestinal bacterial overgrowth.  Other things like you said,  fibromyalgia,  and to go back to what you were saying, Dr. Poulos about the fibromyalgia,  I actually also was diagnosed with fibromyalgia and  at the beginning it was just like, Oh, I have, you know, period pain and pain that was just in my abdomen and  in my lower back.

And as the years went on, it was like, now I have pain everywhere. I have pain in my legs, my hips, my, my arms, my fingers, my, it felt like even my fingernails hurt. Like I, you know, I just had pain  all over my body.  Once I had excision surgery, when we were really able to remove this, stimulus for my pain, as well as  lower the inflammation.

The fibromyalgia pain that I had, it like really, really diminished. It didn't go away. And I ended up working, with, the app called curable, which isn't for everyone, but it's a pain psychology app.  I found it really, really helpful.  After I did that for about, three to six months,  I was free from fibromyalgia pain, so I've actually been endometriosis pain free for six years and fibromyalgia pain free for, for three years.

, thank you.  In terms of what you were saying about,  with the patients and suggesting the psychologist You know, I do think as patients addressing our mental health is so key and so vital. But I think after so many years of doctors like so nonchalantly,  invalidating us by saying  it's all in your head.

I know my own case, I was so reticent to even address my mental health because I thought it meant that like they were right and that I was crazy. Right. So I think in my own case, that was a really big hurdle.  And what I think I see now in the community is  this peer to peer validation it's instead of it coming from the medical community, as you said, not everyone, not every doctor, you know, but these doctors, they're not horrible.

I mean, there's, there's some cases where,  maybe some doctors shouldn't be practicing, but overall it's just  a lack of knowledge.  That's not really their fault. It's based on their education. But I think from the patient side, we, a lot of people we've lost trust. In our doctors and our medical community, it's really hard for me to trust a doctor.

And there's a lot of trauma. Even when I go, you know, see, see a doctor, unless we start to form  a very trusting relationship, I feel trauma every time at the doctor's office. I think in our community, we see a lot of  peer to peer patient to patient validation that let's address our mental health.

Let's see if we can, find ways to think and feel and experience differently our disease. That patient to patient validation,  I think that's how excision surgery began is from  patient to patient validation.  I think we're seeing the same thing  in terms of mental health.

I think that's, , that's really great because this is a full body disease and we need, we need to address it all. We need to address the physical, the mental, the emotional. I want to pick up on one thing you said, which is that even after the excisional surgery, your pain didn't go away right away.

We have to get rid of that stimulus. Like I said, it doesn't mean the nerves, the muscles are going to the minute you wake up from anesthesia. Like, yes, that stimulus is gone. They're so entrenched in the chronic spasm and the nerve stimulation and the chronic spasm. It may go away with time, or it may really take some more intensive interventions, like  medication to be neuropathic, medications to dull the nerve pain for a while, and it may take things, and some of those are antidepressants, and again, we really go out of our way to explain to patients, I'm not giving this to you for depression, but another symptom.

Another effect of this medication is it dulls those nerves that are so hyped up that all I can sense is pain.  I went on, an antidepressant for a while or some other nerve pain medication and, almost always physical therapy. I find it really hard to get patients with chronic myofascial pain better without some good physical therapy.

We're talking about, a lot of avenues in which you can manage endometriosis.  Can we talk about some of the non surgical ways that you could manage maybe if surgery is not an option for you, I know there were a couple that I'll bring up and then we can discuss pain management, diet, lifestyle, supplements, hormonal suppression.

Like you said, pregnancy and why this is maybe not the right option.  Amy, do you want to  go through some of those or talk about what you know as Some ways that you can manage endometriosis before you're going to go for a surgical route.   To start I'll say that pregnancy is definitely not, you know, a way to treat endometriosis.

It is so unfortunate  that in 2024 is still being told to so many patients. And this is,  I don't think we have time to go into that today, but this is just like holdovers from,  myths about endometriosis and  basically saying it's Stems from the uterus and it's from retrograde menstruation, which we know today that It's not, and that cannot be  the principal cause of endometriosis and just basically it's just all this information, misinformation compounds together, plus the lack of knowledge in the medical community and then this holdover  oh, just get pregnant, which is so damaging.

Some, some people are being told, just get pregnant when they're like 14 years old and you're like, what? I mean, I'm in high school, right? Like. What is going on here?  In terms of, non surgical options for treating endometriosis,  I'll talk for a minute about  diet and lifestyle.  I think some patients find when they adopt, an anti inflammatory, diet and lifestyle habits that are health promoting and adequate for them that they diminishment in their symptoms.

I know that was  my own case.  That's how I actually managed for 16 years that I wasn't diagnosed. I noticed that my symptoms were very heavily correlated with what I ate.  Depending on what I ate, I would, I never want to say that I felt good, but I would feel better or worse. When I say better, I just mean better than like, The worst days, but I didn't feel better.

Like, oh, I feel great. And I don't have a disease. I felt horrible every day, unfortunately. But,  I really saw a big difference in my quality of life. Before I followed  my diet and my lifestyle, which for every single person that's individual, my symptoms were at  an eight out of 10, the severity was so high.

Hi, and I couldn't hold a job and I, I really couldn't leave the house. I spent a lot of days bedridden and then once I adopted an anti inflammatory diet, so that's really just fruits, vegetables, whole foods, adequate protein and then  limiting things like ultra processed foods.

In many people's cases, that's also limiting  trigger foods. Trigger foods is when you eat something and you notice that you, your symptoms spike up.  For every person, trigger foods are going to be different. There is not like, this is the trigger food for everyone.  In my own case.

Gluten,  dairy and added sugar are huge, huge triggers for me. And I actually don't eat, any of those three. That is really, really helped improve my quality of life.  Then things like sleeping enough, which is really hard because you're in pain and it's really hard to fall asleep when you're in pain or your legs hurt or your hips are, or, you're throwing up or whatever, whatever reason, um, but trying to get enough sleep every night,  trying to manage your stress.

Which again is really, you know, hard. Of course you're stressed because you're sick all the time. Maybe you're not working, your relationships are falling apart, blah, blah, blah. All of the things I think that are just generally considered  health promoting habits. I think a lot of people with endometriosis, start picking up these habits at an individual level because they notice that it just helps improve their quality of life.

Maybe a lot. maybe a little.  Some people, change their diet and lifestyle and they actually become symptom free.  That doesn't mean that they're cured. There is no cure. And of course, endometriosis, inside of us, it could still be progressing. It could still be like, growing or causing, adhesions and scar tissue.

But at this moment, they may be symptom free for other people. Like for me, I never became symptom free, but I, I, Managed to hold a job, I managed to get back to full time employment, and really improve my quality of life.  I think those are some ways that people can use diet and lifestyle.

Well, that's great.  Very frustrated by,  just walking through our typical grocery store in the U S and seeing all the foods that are fake, processed with sugars and just for fun. I had,  my granddaughter, trying to read granola bar boxes the other day at the grocery store. She can't read yet, but it's like, tell me how much sugar is in this one.

Like, Oh no, that's way too much. How about this one? Lots of added sugar. You know, we were just laughing at the end. We couldn't find a granola bar without lots of added sugar. And people think that's they're being super healthy when they buy granola bars. Right. So I tell patients just to be simple, you know, God gave us fruits and vegetables.

Fish and animals to catch and gave us great whole grains, but he did not grind up the grains and add sugar and make pasta and cake out of them.  not saying you shouldn't have pasta and cake once in a while, but in general, not the go to food.  Now that we're seeing huge inflation of patients are having trouble again, buying decent groceries that may not, I mean, getting into a good diet may not be doable for a lot of people because what can we afford?

It's going to be your canned,  vegetables or some, pastas, which are super cheap,  and processed foods that fill you up, but don't necessarily, add a lot of nutritional value and beyond that may inflame your diseases that are related to chronic inflammation.  it's really frustrating for me as a physician to see how much garbage we eat.

Especially when you're trying to battle an illness that's based on inflammation.

Yeah, if I could just piggyback off that for a second, thank you so much for talking about access and how difficult it is to, follow an anti inflammatory diet because of costs, because of food deserts and because of energy and time.

In my own case, I ended up having to just cook. I like basically cook like 95 percent of my meals and now I'm like really quick at it. I have my recipes. But at the beginning it was a huge obstacle because I noticed that like this food I would buy in the store made me sick. And then if I like made it myself, I didn't feel sick.

Yeah, and I think from a psychological viewpoint, you know, suddenly you're trying to overhaul your, your diet and your lifestyle. And it feels like, oh, now I,  You know, now I'm not going to  have, maybe they're my, favorite foods. Like now I'm not going to have my pasta.

Now I'm not going to have my yogurt. Those were choices I made because I noticed when I ate them, I felt so much worse and I couldn't work. , it was really negatively impacting my life. So I wanted to adopt these different habits, but it, then it felt like another thing that, you know, this disease had taken away.

Right. So there was a real emotional battle for me. And I think for many people for many years. Now I feel really like smooth sailing. I've been on my diet for,  over 15 years.  The same with my lifestyle. It just like is who I am. It's like nature, like second nature to me, but at the beginning it was, it was an absolute fight and it's a privilege to be able to have a,  lead a diet and lifestyle like that.

So thank you for recognizing that. Yeah. And it could be too, that, you know, a lot of,  the patients I see from different cultures, that's just, that's the foods they grow up on and they're not going to change because I, as a doctor said, these other foods are better for you.  The other thing is can be really isolating.

If I was going to a restaurant after work, we're going to happy hour, going out for cocktails and, you're like, oh yeah, I'm not gonna have anything to eat and I, I won't have any alcohol today, you know, but people either try and coerce you or just use, they stop inviting you to happy hour.  And I can imagine if you're already experiencing all these symptoms and a lot of them are causing you pain or fatigue, the idea of overhauling your whole diet.

doing even the research. I feel like that could even be extremely cumbersome to face that uphill battle by yourself. Well, if you're tired, it's a lot easier to grab a sandwich at a fast food place and to go home and cook or go to the grocery store.

Let's talk about hormonal suppression as a way to manage endometriosis.

Mom, do you want to talk a bit about why would that be recommended and how would that be affecting or how would that be supporting someone with endometriosis?

Yeah.   I want to go a little bit back to the retrograde menstruation. So there really are kind of a couple of different theories on endometriosis.

Right. So,  we know that most women have retrograde menstruation. What does that mean? That every month when you,  express blood as part of your menstrual cycle. You're also limiting some glandular cells or endometrial cells from the endometrial layer of the uterus. Now we know that blood goes backwards in lots and lots of women, if not all during your period.

Why do we know this? Because we would do surgery on women during their cycle for other reasons, like she need her appendix out or a gallbladder, whatever. And Oh, Blood's coming out of her tubes. We see it pouring into the abdominal cavity.   Why would those cells stick and grow in some women and not at others?

So probably has to do with genetics.  Or is it that there are some cells there, like embryonic cells on other parts of our body that  are inclined to turn into endometrial type cells and act like endometrial cells and start to grow glandular tissue and other spots. It's probably a combination of those two things.

We know that ladies who are born with some blockage  of their reproductive tract, like cervical stenosis or an imperfect hymen, that type of thing, or the period blood really, really, really backs up quite severely, they have more likelihood of endometriosis.  Does that mean they were likely to have one kind of,  disorder that happened during their formation or is it because the blood backed up and it really does, then the glands have a better chance to stick and grow.

probably some combination thereof.  We know that endometrial cells respond to hormones or they respond to your natural estrogen basically. So if we can cut down on your natural estrogen, will those cells be less likely to grow and spread or will they be less likely to stay alive and keep or just not reproduce anymore?

So the first step we typically try is hormonal suppression.  That might be birth control pills. And I've said before, you'll hear me say it again. Many of us would rather they were called hormonal regulation pills instead of birth control pills, because if you are the 14 year old with terrible periods and maybe have endometriosis,  we may, as a gynecologist, try and get your parents to let you go on birth control pills.

Like, no, my daughter's that's sexually active. No way. And some people are still afraid that will make their daughter. likely to have sex at an early age or be promiscuous because she's on birth control pills. Really? We're trying to regulate our hormones.  That's one form. Another form could be the shot we've talked before about different forms of hormonal birth control on our show, like progesterone injections, which will help suppress ovulation and therefore suppress or counteract your estrogen, or even an IUD, which goes in the uterus and releases her progesterone hormones.

locally in the pelvis, but can also suppress endometriosis.  For one thing, decreasing how much, how many endometrial glands you're going to build up every month. So they don't have a chance to spread, but also to suppress other cells in the area that are really estrogen active. And then some of the other ones, like Amy mentioned earlier, the GnRH agonists,  which  And GnRH is gonadal, releasing hormone, which gets to be related to LSH, the luteal phase stimulating hormone, and FSH.

The GnRH goes in the brain and helps quiet down the parts of the brain that are causing your ovaries to stimulate, you to have ovulation, and therefore estrogen release. Those forms. , have different side effect profiles to others. The traditional ones we used to use,  was the Lupron was,  one that was the old one we had for years and years.

It's still around.  Guys take it when they have prostate cancer and women can take it for a variety of hormonal reasons.  But it basically puts you into menopause, so it could be a really unpleasant drug to take. Mood swings, dry vagina, no sex drive,  all the side effects that go along with an abrupt introduction of menopause and women couldn't stay on it very long because it could lead to osteoporosis.

It really was that effective at suppressing our estrogen.  One that we used to give a lot was Dianosol, which is more of an androgen type drug that gives you the androgen that cuts down on your estrogen effect. Well, we have to tell women you could grow a beard that's permanent, um, hair, the permanent male pattern baldness, as well as, bad acne and a permanent lowering of your vocal cords.

So deepening of your voice. But here, let me give you this drug.   A lot of women wouldn't take that, and I didn't blame them,  but it could be effective at relieving their pain, but causing all kinds of other problems. And now of course there are the newer medications such as you mentioned that are in a pill form and have a much more palatable side effect profile.

What are the odds that  this hormonal suppression is going to be enough to be effective?  Having someone feel symptom free enough or better enough to go about their life.  , in an individual patient, we, I can tell you what percentages are, but we don't know if it's going to help you or not until you try it.

It's kind of the thing. And why does it help some women and not others? We don't, we don't really know that.  If there's pills now available, like you mentioned the brand names of or Orlyssa and, there's others that we can give you and you can take. Typically, you can get a sample for a month or two, see how does it make you feel?

It shouldn't have any permanent bad effects on you. You can see if it makes your pain better, are the side effects palatable and see if it helps you. But I can't do a test right now and say, Hey Amy, this drug is going to work for you. Great. Just take it. I did it. I did a little cell biopsy. I know this is the right drug for you.

We think medicine will get there one day. We're just not there yet.  Did you ever go down the road of hormonal suppression or was that ever something that was It's given to it as advice or as a medical option, Amy.

I mean, In my own case, definitely. I think I tried like five different birth controls.

I tried,  estrogen, progesterone combined birth control.  There's different ones out there. So I tried like several different brands. I tried the ring, right. The birth control ring that goes in vaginally. Let's see. I tried, the Depo Provera shot. So I, I definitely tried a, a bunch.

This was before I was even diagnosed. Cause again, I was presenting with the gynecologist. I had a really, really painful period since they were like, okay, we don't know what's going on, but we know we want to put you on birth control.  Okay, great. Like I want to, I want to feel better.

I want to, get my life back. , But I think, unfortunately, for some people, what we find is that the side effects aren't worth,  the benefits,  sure, my period pain went away, but at a great cost to me, when some of the pills gave me migraines, some of the pills,  really drastically affected my mental health.

Especially like I think people can find that the progestin only pills can like really, really affect their mental health. Like I thought I was losing my mind. I became like paranoid and weepy and crying all the time and angry and having all these mood swings. And, you know, ultimately my own case, I was like, this is not worth it.

Like I would rather feel like myself. And like have my horrible, disease symptoms, then deal with the side effects of these medications.  I think unfortunately,  sometimes I,  see like, in the medical field, they're saying things like, Oh, the birth control pills, maybe they work for , in like one study, like 70.

5 percent of patients.  A high number, but it was like, okay, but what are the patients saying about the side effects? Because I can say that, you know, did Depo Provera, which took away my period,  help my period pain. Absolutely. It helped my period pain. I didn't have a period anymore, but it was not worth it to me at all.

And I vowed I would never, , as an individual take that, that again, I'd rather have my period pain.  I think sometimes. It's a point of frustration with patients because the options that were offered and I mean, these are what's available and the doctors are doing their best, but the options that were offered, they're not good enough,  in many cases.

Of course there are people who,  they go on, a birth control or the IUD  or the Depoprovera or something   and it works for them. It works for them and they have a very low symptom side effect profile.  That is so, so fabulous.

What's easy, what's fairly inexpensive and what's least likely to have a bad side effect for you.  I think progression,  as I mentioned, those medications make sense to try because we never know, like I said, ahead of time, who's it going to help. Who's the run of the mill menstrual cramps versus who has endometriosis and may need something else.

And some patients endometriosis will do fine with birth control pills too. So there's not just one roadmap for 

I also know that surgery is an option.  There's two that I'm aware of, ablation and excision.  I was wondering, Amy, do you mind explaining a bit about the difference between ablation and excision?

And then  maybe about your own journey, because I know that you have had excision surgery and that it has yielded good results for you.  If you could talk a bit about those two surgeries and also what your journey has been like.

There is two different types of surgeries. There's the ablation and the excision.

Excision is basically a surgery that is going to go in and it's going to, it's going to cut around the disease. It's going to cut it out, right?  If you picture like a weed, this is a very common analogy. If you have a weed,  the excision is going to  take a shovel and it's going to dig around.

It's going to get the roots and it's going to yank out that weed.  If it was done successfully  that weed,  the roots and the, it's not going to be there anymore. This is not a cure. So even with excision, you're not, you're not cured.  You still have endometriosis, but they cut out the tissue that has the disease.

Also with excision, they,  do things like they'll cut the adhesion. So adhesions are when you have like bands of scar tissue and they tend to stick things together.  Like your uterus to your,  your colon, right? Or they'll. stick like your ovaries together.

So obviously that's very painful. They'll restore your anatomy. with the ablation, if we think about the weed, it's basically like you go in and you take  a flame thrower and you just burn the top of the weed, but you never get in that soil underneath and take out that root.

That's the, really the difference I would say between the two.  There's different pros and cons for excision and ablation.  Ablation a lot more, gynecologists can do that surgery because it is a surgery that involves like a lesser, a less,  expert technique.

It's a faster surgery. It tends to be a cheaper surgery. With the  excision, unfortunately, it does take  a really high level of training, and that's why you'll hear in the community of the importance of going to an excision surgeon, like going to a doctor who's been trained, who knows how to go in there.

It is considered one of the most complex gynecological surgeries.  It is  important that the surgery is done by an expert. Otherwise you can imagine  the surgeon's going in there, they're trying to cut out on all these really delicate tissues, maybe on your bladder, on your bowels, like on your utero, sacral ligaments,  that holds your uterus in place.

Maybe they can cause more damage.

Endometriosis can be invasive.  I often describe it as being  like a cancer, so it's not going to kill you, but it grows into tissues where it has no business living. and it damages them. So the treatment can be a lot like cancer. You want to go cut out the big parts and then give chemotherapy.

And then here, we're not giving the typical chemotherapy you might hear about for say, ovarian cancer, like you're not going to get carboplatin type.  Chemotherapy is going to be a hormone now to suppress whatever is left behind or growing and keep future endometriosis from growing and flourishing.

I would,  point women to look for, , a MIGS specialist, so a minimally invasive gynecologic surgeon. They do more than just, endometriosis surgery, but usually those are the ones who are, have the special training on, not just approaching it minimally invasive, but to deal with endometriosis and do that type of surgery.

If it's possible, and it's really hard to find surgeons who are like,   the top tier endometriosis surgeons because there are so few of them. I think there was an estimate that maybe there's only  two or three hundred,  surgeons who can really do excision here in the United States.

If they've had a very specific endometriosis fellowship for excision, that will be something that they would then train and like beyond MIGS to even like up those skills even further.  There are some surgeons across the world who  they really just do excision surgery.

I know it's evolved and know how to do it. I don't do that type of surgery on an everyday basis. I would even send my patients for excisional surgery elsewhere because you want someone who does this all the time and really knows about it. So when I say it's invasive, the endometriosis can be growing into the wall of the bowel, into the muscle layer of the bowel.

In order to excise it, I have to put a hole in your bowel. It doesn't mean the surgeon accidentally cut your bowel. That's part of the process and that they have to be prepared that you may wake up with a bowel that's been sewn back together and may be leaky for a while, or that you may even, some women will end up with a temporary.

bag to drain their colon on the outside until it can be put back together if their endometriosis is that invasive and it can wrap around the ureter, the tube from the kidney to the bladder and grow into that and you really need someone who knows how to then put your ureter back together if they have to cut part of your ureter to rid you of your endometriosis.

Exactly.  I think in the community we talk a lot about like just really trying to find the most expert surgeon that you can, who is like high volume excision surgery, who has done a lot of cases,  and  the surgeons are out there, but they can be hard to access because  they're not in every city.

They're not even in every state. I'm talking from the U S.   There are surgeons in the U S for excision, but there's definitely not in every country like around the world either. I have a great resource on my website about how to find, try to find an excision surgeon in your area.

Some people end up,  traveling or going to,  centers for excision surgery because, really want to be with, a skilled surgeon to not have, we don't want to go into surgery. And then we come out with more damage then before I went in and I think to circle back to the ablation surgery,  it's not just about ,  burning  the weed versus yanking out the weed by the root.

One of the things with ablation surgery is that, the burning, what that can do is,  first of all, it doesn't burn very deep. So likely doesn't remove all the endometriosis and then,  can form the scar tissue. So not only do you have endometriosis still in your body, but you're forming like scar tissue, on top of the endometriosis.

Then the endometriosis is  that can cause more pain,  more symptoms, more inflammation,  personally.  I always,  my role, I think, as an advocate is to just give patients information and help them make an informed decision. There's very few times when I, take a stance about, what I think patients should do, because it is individual.

But I personally don't think ablation surgery should be, should be done on,  patients. I understand why patients choose to get ablation surgery, but I, uh, Personally, I don't think the outcomes are, are very good.  In terms of like long term pain or symptom resolution, some patients are having ablation surgeries every year, five, 10, 15, 20 times.

Imagine the toll of that, the psychological, the financial, the emotional toll of having surgery after surgery, not finding long term relief.  That's really devastating and,  can cause a lot more damage inside that can then make it a lot harder if you do end up.  Accessing an excision surgeon.

It can be a lot harder for that surgeon to,  help you have the best resolution of your symptoms.


Community Shout Out:

Now it's time for today's episode's community shout out.  Just a reminder that the community shout out is something we're doing all throughout season two to shine some praise on an individual or community organization that's doing great work in the women's health space.  Today's community shout out is chosen by our wonderful guest Amy, so tune in.

It is, another endometriosis advocate who is just doing incredible work in the community.  Her name is Kimather and on Instagram, she goes by the rebellious uterus.  She also has a podcast called endo thick of it, which she does with her husband, Brandon.

It's actually really cool because they do  the couple perspective.  Her and her husband, and they interview experts and they talk very frankly about  their own, relationships, sex life, things like that. Kimather is a nurse practitioner as well as an endometriosis patient and has other co conditions as well, like fibroids and,  It's anemiosis.

She's doing really, really amazing work and she comes at it from, , not only is she this really well informed patient, but she's also a practitioner. She's also a black woman and she talks often about her experience as a black woman with Chronic pain and the obstacles that she's come up against.

I absolutely recommend  following her, listening to her podcast because,  there's a lot to learn from patient experiences. And I think Kimather has a really unique voice.

She's absolutely fabulous and she brings a lot to our community.

I can't wait to check out. I love the name, The Rebellious Sisters. Uterus.  That uterus certainly is rebellious.

Thank you, Amy, for spending your time with us.

Thank you both so much, Valerie and Dr. Poulos, for having me on your podcast today. I really appreciate being here. I love the focus on endometriosis and,  empowering patients,  to learn more about their options and the care that's available.

 
Outro:

Thank you so much for listening to this episode of Not So Private Parts, A Girl and Her Gyno Mom.  I hope that you've learned something from this episode or taken something away. I certainly know that I have.  So what can you do to support Not So Private Parts podcast?  You could leave us a rating or review wherever you're listening to this podcast.

This supports our show to reach more fabulous people, and it gives us a little push on those tired days to keep creating.  You could share this show with a pal. We know that not every topic is going to be interesting to everyone, but if you find a topic that you liked and you think someone else might too, share it with them. 

You can follow us on Instagram at NotSoPrivatePartsPod.  Shout out to the wonderful Katie who's been doing a great job womanning that page.  You can head to our website to check out some more information about our incredible community shoutouts and fine episode transcripts.  Roll the credits.  The show was created and produced by me and my lovely mama. 

The gorgeous voice that you heard singing in the beginning was an incredible gal and pal I know, Raley Mauck, and the super cool logo you're seeing was designed by Karin Buffie.

We'll see you next time.